Data scarcity, or more specifically, the lack of usable and high-quality data (that is, data that has been cleaned, processed, is of high quality in accuracy and relevance, and formatted, in each case to a widely and commonly accepted standard) is an endemic problem in relation to various industries and the healthcare and pharmaceutical industries are no exception. An article published by the World Economic Forum (WEF) identified that although the healthcare sector generates a 'staggering amount of data,' a whopping '97% of it goes unused.'

In the ideal world, we would see the availability of centralized digital repositories with complete, up-to-date, fully usable health information available to the community in an accountable and secure framework.

The lack of such a framework can lead to undesirable outcomes. One US commentator argued for a national health information exchange to deal with this issue, one that formally establishes required standards for creating, maintaining, and sharing these records, and one that creates the infrastructure and capability to gather, integrate, store, and use health records, arguing that the COVID-19 pandemic threw a spotlight on the dangers arising from the lack of such access.

Other commentators argue that data scarcity or 'health data poverty' from certain communities could result in unrepresentative datasets that produce poor quality and ineffective artificial intelligence (AI) developed and machine-learning medical solutions - essentially creating a digital divide where some of the best advances in medical innovation leave out (and leave behind) such communities. Indeed, persistent data scarcity in medical machine learning has led some authors to propose solutions such as reliance on synthetic data, but even such solutions need to ensure realism and avoid harmful biases.

The article by the WEF identified three themes of concern to address this: 'the sheer volume of data, data privacy concerns, and the need for interoperability.'

In this Insight article, Jeffrey Lim and Frederick Tay, from Joyce A. Tan & Partners LLC, look at this issue from a data privacy perspective and discuss ongoing work on the Health Information Bill to develop a potential national health data repository in Singapore. This Bill has the potential to provide the framework for the delivery of a high-quality, usable healthcare data exchange - to ask how one might see such legislation establish more than a national repository and database to service patients, but also build a sound, secure, and accountable framework for conducting data collection, use, and processing in the name of innovation, improving healthcare, pharmaceutical solutions, and the medical outcomes of therapies and treatments.